Any BB with G6PD Deficiency?
- Thread starter gtea
- Start date
cheekybonbon
New Member
Thanks Mamapig and Gemson. Will bring him to consult doc. Thanks
Hi cheekybonbon,
my suggestion is not to give ur bbany chinese med. I still believe in the western med.
FYI, i consulted the PD if G6PD bb can come in contact wiht methol/ methyl cos some fever colling pad has this ingredient. PD say is ok so long not in huge dosage. I suppose a little is ok but we still hv to monitor the bb's reaction. Of cos, given the choice, try to avoid..
my suggestion is not to give ur bbany chinese med. I still believe in the western med.
FYI, i consulted the PD if G6PD bb can come in contact wiht methol/ methyl cos some fever colling pad has this ingredient. PD say is ok so long not in huge dosage. I suppose a little is ok but we still hv to monitor the bb's reaction. Of cos, given the choice, try to avoid..
cheekybonbon
New Member
Hi snow baby,
Thanks for ur advice. We did not give him Chinese med.
My bb has recovered, but still having a bit cough. We suspect is due to the air-con, too cold....
Yes,my PD also said that menthol is not an issue to a g6pd deficiency bb
Thanks for ur advice. We did not give him Chinese med.
My bb has recovered, but still having a bit cough. We suspect is due to the air-con, too cold....
Yes,my PD also said that menthol is not an issue to a g6pd deficiency bb
gtea,
i delivered my boy in kk. yes, kk will keep baby in for 14 days if baby is needed light theraphy. if no need, baby will be able to discharge after 1 week. my boy was discharge after 1 week of monitoring in kk for jaundice since it didn't hit the high level whereby theraphy is need.
my #2, she is not G6PD. so your 2nd baby might not be too.
i delivered my boy in kk. yes, kk will keep baby in for 14 days if baby is needed light theraphy. if no need, baby will be able to discharge after 1 week. my boy was discharge after 1 week of monitoring in kk for jaundice since it didn't hit the high level whereby theraphy is need.
my #2, she is not G6PD. so your 2nd baby might not be too.
The next day after I gave birth, PD came to our room and told us baby was ok, except that he is a G6PD deficient. He then asked who between hubby and I have history in our family.
I knew all along that my younger bro is a deficient. Hubby has never heard of it until that day.
Straightaway, I was "confirmed" I am a carrier. Something I didn't know.
I was kinda devastated, coz at that point of time, I thought I "ruined" my baby's life by bringing him to the world.
Many asked what would I have done if I knew I was a carrier. I am not sure either.
Now, baby has just turned 1 yo, healthy, happy baby he is. Occassionally this deficiency will slip off my mind.
On other occassions, I wished he doesn't have this deficiency. It's not big deal, but nonetheless, when asked about medical condition, he would have to inform medical staffs that he is a deficient.
Meanwhile, I can't help thinking about his NS. Hahaha.. ya, I think too far, but any idea how this will affect his NS? I do not want this condition to deter him from being manly and contribute to his country.
gtea: I think the duration depends on the jaundice level. My baby developed jaundice on his 3rd day, very mild jaundice, but he was put on UV light on the 4th day coz jaundice was raising, although still below normal specs. PD says G6PD babies tend to spiral upwards tremendously, thus close monitoring need to be carried out for them. UV top on 4th day, top and bottom on 5th day, removed UV on 6th day, and he was released on the 7th day. I cried on the 5th day, when PD called, I asked when can he be released coz I missed him so much. Hubby went to hospital everyday to deliver EMB and took pics for me to see. Typing it now, over a year ago, tears still streaming. But the detain in hospital, made me appreciate my baby so much that I have never complained how tough it was to bathe and latch him after c-sect, and never complained how tough it was to wake up every 3 hourly to express BM. His absence in the beginning made me realised he is my everything. And I shall never complained. Good luck in your upcoming happiness!
I knew all along that my younger bro is a deficient. Hubby has never heard of it until that day.
Straightaway, I was "confirmed" I am a carrier. Something I didn't know.
I was kinda devastated, coz at that point of time, I thought I "ruined" my baby's life by bringing him to the world.
Many asked what would I have done if I knew I was a carrier. I am not sure either.
Now, baby has just turned 1 yo, healthy, happy baby he is. Occassionally this deficiency will slip off my mind.
On other occassions, I wished he doesn't have this deficiency. It's not big deal, but nonetheless, when asked about medical condition, he would have to inform medical staffs that he is a deficient.
Meanwhile, I can't help thinking about his NS. Hahaha.. ya, I think too far, but any idea how this will affect his NS? I do not want this condition to deter him from being manly and contribute to his country.
gtea: I think the duration depends on the jaundice level. My baby developed jaundice on his 3rd day, very mild jaundice, but he was put on UV light on the 4th day coz jaundice was raising, although still below normal specs. PD says G6PD babies tend to spiral upwards tremendously, thus close monitoring need to be carried out for them. UV top on 4th day, top and bottom on 5th day, removed UV on 6th day, and he was released on the 7th day. I cried on the 5th day, when PD called, I asked when can he be released coz I missed him so much. Hubby went to hospital everyday to deliver EMB and took pics for me to see. Typing it now, over a year ago, tears still streaming. But the detain in hospital, made me appreciate my baby so much that I have never complained how tough it was to bathe and latch him after c-sect, and never complained how tough it was to wake up every 3 hourly to express BM. His absence in the beginning made me realised he is my everything. And I shall never complained. Good luck in your upcoming happiness!
Hi mommies!
I was surfing the internet for more info (has always been doing so) & chanced upon this forum! My little girl just turned 1 yr old this month & is g6pd deficient too. Same as some of you, makes me keep wondering how come she is g6pd deficient when my hubby (he said he did test during NS so should be clear) & I (I had no idea I may be a carrier, my parents didn't even know what g6pd was too before my little girl popped) don't have it... So I guess I must be a carrier. I have a couple of issues to share/seek your opinions on actually. In fact, I know people with g6pd deficiency can still lead normal lives (thankful she is all healthy & normal otherwise) but I can't help but feel stressed (esp over food restrictions) and yes, upset too, like I brought it upon her. Initially, when the pd came to inform me, I blamed myself hard.
Anyway, I'm breastfeeding still, so I am avoiding many foods in fear of affecting her. The 'lucky' thing so far is, she is diagnosed with supposedly mild deficiency, but also makes me also wonder if that means it would be even harder to know if any foods/drugs did affect her in any way? And that people around me might take this even more for granted?
1) I understand that mothballs and fava beans are a big no no. But what abt the rest? I got a pamphlet (from my pd) under HPB which is quite general stating that certain beans, nuts and Chinese medications are to be avoided too. But what/which? Not mentioned. So I'm really clueless & unsure as to which foods are entirely safe or not. From what I read online (sites like http://g6pddeficiency.org/wp/living...-deficiency-foods-to-avoid-list/#.UuazJHjXfCR), it seems a huge long list (due to soy which is so commonly found in many foods). Does any mommies have a more detailed list from doctors/pds/hospitals? Also, what are your opinions on soy-related foods e.g. soy sauce, beancurd etc? Safe/unsafe to consume?
2) I have been told (by pd) that I should be a carrier, hence my baby girl got it from me. But when I do research abt this "inheritance thingy" online, it seems that carrier also means "partially deficient", unlike the usual common understanding by most people that carriers are not affected at all (otherwise pd would have told me to avoid too). Here is a link to share: http://www.rddiagnostics.com/g6pd_faq.htm#11. Not only this site, I read alot of sites saying the same thing. So I am actually hoping now that I am also "partially deficient" & mild case like hers so it would mean I don't exactly have too much to worry abt since I ate so much of the contradicted foods/drugs already...
3) In relation to issue 2), do you know where we can test for g6pd deficiency & the quantitative test? Is it only in hospitals? & does anyone know what is the cost like?
4) Just wondering, is there any g6pd specialists out there in sg?
5) Formula milk - I am intending to feed my little girl fm now that she has turned 1 yr old... But I realized that most (or all?) formulas have soy in them. Another would be Vitamin K1, which I found in this list: http://g6pddeficiency.org/wp/living-with-g6pd-deficiency/drugs-to-avoid-list/#.Uua2XXjXfCR, which is of low risk.
Are there formulas without soy in them? & what do you mommies recommend/give to your babies/toddlers? My pd recommended S-26 Gold & Pediasure because she is a little on the smaller side. & then I noticed Pediasure has "Colour" under its ingredients and so it makes me wonder if it's any artificial coloring which is again, to be avoided. I really don't wish to be feeding my girl something daily for a long period of time which affects her in any way (causes hemolysis).
6) What do you think about the long term hemolysis that is said to be harmful to health in the long run? What I read was, even though if it looks like normal on the outside, but eating contradicted foods can still cause hemolysis and may not be serious enough to show symptoms... Here's a link to share: http://g6pddeficiency.org/wp/g6pd-deficiency-home/hemolytic-anemia/#.Uua5TXjXfCQ. & I somehow also have this impression that most pds/doctors will dismiss this low level hemolysis thingy because 'nothing' really happened.
I may sound super kiasi to some of you but I'm just a concerned mommy who really just wants to play it safe since now I'm breastfeeding so I have that strong responsibility feeling to be careful enough not to be 'feeding' her with any contraindicated foods...
Would love to hear any advice/opinions/comments to share from other mommies... Thanks in advance! & was thinking whether we might want to have a group where we could gather all mommies with g6pd deficient babies/kins to share info/ask questions with each other? I realized there isn't much info/support on g6pd...
I was surfing the internet for more info (has always been doing so) & chanced upon this forum! My little girl just turned 1 yr old this month & is g6pd deficient too. Same as some of you, makes me keep wondering how come she is g6pd deficient when my hubby (he said he did test during NS so should be clear) & I (I had no idea I may be a carrier, my parents didn't even know what g6pd was too before my little girl popped) don't have it... So I guess I must be a carrier. I have a couple of issues to share/seek your opinions on actually. In fact, I know people with g6pd deficiency can still lead normal lives (thankful she is all healthy & normal otherwise) but I can't help but feel stressed (esp over food restrictions) and yes, upset too, like I brought it upon her. Initially, when the pd came to inform me, I blamed myself hard.
Anyway, I'm breastfeeding still, so I am avoiding many foods in fear of affecting her. The 'lucky' thing so far is, she is diagnosed with supposedly mild deficiency, but also makes me also wonder if that means it would be even harder to know if any foods/drugs did affect her in any way? And that people around me might take this even more for granted?
1) I understand that mothballs and fava beans are a big no no. But what abt the rest? I got a pamphlet (from my pd) under HPB which is quite general stating that certain beans, nuts and Chinese medications are to be avoided too. But what/which? Not mentioned. So I'm really clueless & unsure as to which foods are entirely safe or not. From what I read online (sites like http://g6pddeficiency.org/wp/living...-deficiency-foods-to-avoid-list/#.UuazJHjXfCR), it seems a huge long list (due to soy which is so commonly found in many foods). Does any mommies have a more detailed list from doctors/pds/hospitals? Also, what are your opinions on soy-related foods e.g. soy sauce, beancurd etc? Safe/unsafe to consume?
2) I have been told (by pd) that I should be a carrier, hence my baby girl got it from me. But when I do research abt this "inheritance thingy" online, it seems that carrier also means "partially deficient", unlike the usual common understanding by most people that carriers are not affected at all (otherwise pd would have told me to avoid too). Here is a link to share: http://www.rddiagnostics.com/g6pd_faq.htm#11. Not only this site, I read alot of sites saying the same thing. So I am actually hoping now that I am also "partially deficient" & mild case like hers so it would mean I don't exactly have too much to worry abt since I ate so much of the contradicted foods/drugs already...
3) In relation to issue 2), do you know where we can test for g6pd deficiency & the quantitative test? Is it only in hospitals? & does anyone know what is the cost like?
4) Just wondering, is there any g6pd specialists out there in sg?
5) Formula milk - I am intending to feed my little girl fm now that she has turned 1 yr old... But I realized that most (or all?) formulas have soy in them. Another would be Vitamin K1, which I found in this list: http://g6pddeficiency.org/wp/living-with-g6pd-deficiency/drugs-to-avoid-list/#.Uua2XXjXfCR, which is of low risk.
Are there formulas without soy in them? & what do you mommies recommend/give to your babies/toddlers? My pd recommended S-26 Gold & Pediasure because she is a little on the smaller side. & then I noticed Pediasure has "Colour" under its ingredients and so it makes me wonder if it's any artificial coloring which is again, to be avoided. I really don't wish to be feeding my girl something daily for a long period of time which affects her in any way (causes hemolysis).
6) What do you think about the long term hemolysis that is said to be harmful to health in the long run? What I read was, even though if it looks like normal on the outside, but eating contradicted foods can still cause hemolysis and may not be serious enough to show symptoms... Here's a link to share: http://g6pddeficiency.org/wp/g6pd-deficiency-home/hemolytic-anemia/#.Uua5TXjXfCQ. & I somehow also have this impression that most pds/doctors will dismiss this low level hemolysis thingy because 'nothing' really happened.
I may sound super kiasi to some of you but I'm just a concerned mommy who really just wants to play it safe since now I'm breastfeeding so I have that strong responsibility feeling to be careful enough not to be 'feeding' her with any contraindicated foods...
Would love to hear any advice/opinions/comments to share from other mommies... Thanks in advance! & was thinking whether we might want to have a group where we could gather all mommies with g6pd deficient babies/kins to share info/ask questions with each other? I realized there isn't much info/support on g6pd...
erinewong
Member
Hi hi all mommies,
Just share with my experience.. my boy also have a G6PD when he born in KKH 2005 so KKH keep baby in for 14 days if baby is needed light theraphy. After my boy was discharge everything in ok and im still in breast feeding too. But in future they need to avoid & take note some of foods or things can't be touch..... like a fava beans, Chinese medications, mothballs, etc. For my boy he is a very sensitive when he eating or touch the things..
Remember highlight to school or clinic about the kids got a G6PD and will be all right ... Now a day my boy getting 9 yrs old all in ok. Dun worries too much!!!
Just share with my experience.. my boy also have a G6PD when he born in KKH 2005 so KKH keep baby in for 14 days if baby is needed light theraphy. After my boy was discharge everything in ok and im still in breast feeding too. But in future they need to avoid & take note some of foods or things can't be touch..... like a fava beans, Chinese medications, mothballs, etc. For my boy he is a very sensitive when he eating or touch the things..
Remember highlight to school or clinic about the kids got a G6PD and will be all right ... Now a day my boy getting 9 yrs old all in ok. Dun worries too much!!!
erinewong
Member
Hi Cozel,
Ya, My boy quite sensitive in foods and touching the things, we had to check with doctor izzit coz the G6PD but doctor said not really.
Most important to avoid kids to eating or touching fava beans, Chinese medications, mothballs, we also avoid air freshener/ oil too ... lol... coz of my son
My son drink Dumex mamil gold when he born till 7 yrs old time. Now he have drink with soy every morning and night time too.
Cheers.
Ya, My boy quite sensitive in foods and touching the things, we had to check with doctor izzit coz the G6PD but doctor said not really.
Most important to avoid kids to eating or touching fava beans, Chinese medications, mothballs, we also avoid air freshener/ oil too ... lol... coz of my son
My son drink Dumex mamil gold when he born till 7 yrs old time. Now he have drink with soy every morning and night time too.
Cheers.
Hello, its not true that G6PD affected children cannot take Malaria Jabs. There are G6PD safe malaria medicines available.
Try Shatavari instead. I had it and my son is G6PD. No side effects whatsoever.
Hi 9nehak
I am not sure about the medicines but at least it was what doctors told us last time. there could be advances since
Yes possible
I can actually find out the name of the malaria jab suitable for G6PD deficient children if you want.marco.g6pddeficiency
New Member
Hello,Hi Cozel,
Ya, My boy quite sensitive in foods and touching the things, we had to check with doctor izzit coz the G6PD but doctor said not really.
Most important to avoid kids to eating or touching fava beans, Chinese medications, mothballs, we also avoid air freshener/ oil too ... lol... coz of my son
My son drink Dumex mamil gold when he born till 7 yrs old time. Now he have drink with soy every morning and night time too.
Cheers.
If I can be of any help please get in contact with me through my contact page on: www.livingwithg6pddeficiency.com
Or you can e-mail me directly: [email protected]
I have joined this site so I can be of help to all of you on this topic in anyway I can. Please let everyone know about me and the website. The more information we can gather on this deficiency the better we can understand it.
Kindest Regards,
Marco
marco.g6pddeficiency
New Member
Hello,Hi hi all mommies,
Just share with my experience.. my boy also have a G6PD when he born in KKH 2005 so KKH keep baby in for 14 days if baby is needed light theraphy. After my boy was discharge everything in ok and im still in breast feeding too. But in future they need to avoid & take note some of foods or things can't be touch..... like a fava beans, Chinese medications, mothballs, etc. For my boy he is a very sensitive when he eating or touch the things..
If I can be of any help please get in contact with me through my contact page on: www.livingwithg6pddeficiency.com
Or you can e-mail me directly: [email protected]
I have joined this site so I can be of help to all of you on this topic in anyway I can. Please let everyone know about me and the website. The more information we can gather on this deficiency the better we can understand it.
Kindest Regards,
Marco
marco.g6pddeficiency
New Member
Hello,
If I can be of any help please get in contact with me through my contact page on: www.livingwithg6pddeficiency.com
Or you can e-mail me directly: [email protected]
I have joined this site so I can be of help to all of you on this topic in anyway I can. Please let everyone know about me and the website. The more information we can gather on this deficiency the better we can understand it.
Kindest Regards,
Marco
marco.g6pddeficiency
New Member
Hello,
If I can be of any help please get in contact with me through my contact page on: www.livingwithg6pddeficiency.com
Or you can e-mail me directly: [email protected]
I have joined this site so I can be of help to all of you on this topic in anyway I can. Please let everyone know about me and the website. The more information we can gather on this deficiency the better we can understand it.
Kindest Regards,
Marco
